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Allee Mullen didn’t set out to be the first. When she became pregnant in the summer of 2018, it wasn’t even her first child. But what this courageous mom undertook has opened the door to a potentially life-altering procedure for prenatal spina bifida patients in Pittsburgh.
In early December, a routine ultrasound at 20 weeks of pregnancy uncovered prenatal signs of spina bifida, a condition present in about 1,645 births in the United States each year, according to the Centers for Disease Control and Prevention.
More testing the following day at UPMC Magee-Womens Hospital in Oakland confirmed the baby’s neural tube anomaly. The baby had myelomeningocele, the most serious type of spina bifida, where the unformed spinal cord protrudes through defects in the bone, muscle, and skin of the back and is exposed outside the body.
Mrs. Mullen, who is a Pediatric Intensive Care Unit nurse at UPMC Children’s Hospital of Pittsburgh, has cared for pediatric patients with spina bifida. She knew the moderate to severe disabilities that could occur with myelomeningocele — it can affect a child’s ability to move the legs and feet, walk, and empty the bowels and bladder.
The options were daunting: pregnancy termination, postnatal repair of the defect, or newer in utero surgery. And if she wanted to have the protracted treatment for an in utero repair near her home in Eighty Four, Pennsylvania, it would be managed by a team of doctors from UPMC Children’s and UPMC Magee-Womens who had received intensive training for the fetal procedure, but never performed one in utero.
“Termination was not an option for my husband and me,” Mrs. Mullen says. “We spent the next weekend researching and looking into things, and praying with our family.”
Collaborative care, a unique and ongoing collaboration between UPMC Children’s and UPMC Magee-Womens allows the area’s youngest patients to get help before they are even born. The Mullens consulted with Stephen Emery, MD, director of the Center for Innovative Fetal Intervention, Division of Ultrasound at UPMC Magee-Womens, then met with Stephanie Greene, MD, director of Perinatal Neurosurgery, Division of Pediatric Neurosurgery at UPMC Children’s, to discuss and compare the likely outcomes for in utero and postnatal surgery.
A study published in the New England Journal of Medicine in 2011 showed that repairs performed in utero significantly reduced the incidence of three common effects of myelomeningocele:
“Dr. Greene gave us an idea of what kind of life the baby would have after in utero surgery,” says Mrs. Mullen. “It is probably the best decision my husband and I could have made.”
Following the release of the study, a joint team from UPMC Children’s and UPMC Magee-Womens was among those from multiple health centers in the United States who trained to perform the new technique. But there were no suitable candidates in Pittsburgh with the physical and mental attributes to successfully undergo such a rigorous course of treatment … until Mrs. Mullen and her baby.
“Allee is medically savvy because she’s an intensive care unit nurse. She understood all the risks that we were talking about more than the average person. She was also in good health, and this was going to be her last baby,” says Dr. Greene, who performs from 10 to 20 postnatal spina bifida repairs at UPMC Children’s each year. “There were no disqualifiers for the baby, either.”
The fetal anomaly was at a level where fetal surgery can make a difference (not too high or too low), she didn’t have kyphosis (excessive convex curvature of the spine), and her ventricles were not so large as to make the need for a shunt inevitable regardless of fetal intervention.
“Allee knew it was the first time the procedure was being done here and she was OK with that. She trusted us,” adds Dr. Greene.
Despite the challenges facing them, the Mullens were steadfast in their decision. “With Allee working at UPMC, she had a lot of confidence in the doctors and the staff. We had faith in them,” says her husband, Kevin Mullen. “And why not do it here at home where you’re close to family members rather than going somewhere else?”
Because the surgery needed to take place by the 26th week of pregnancy, doctors moved quickly to plan the procedure for Jan. 4, 2019, and organize a team that included not only specialists in Pediatric Neurosurgery and Maternal Fetal Medicine, but also specialists from Cardiology, Critical Care Medicine, Genetics, Neonatology, Obstetric Anesthesiology, Ultrasound, and other areas. “Basically the whole hospital — all of UPMC — was available if we needed them,” says Dr. Emery.
To begin the operation, Dr. Emery made incisions in the abdomen and the uterus to reveal the fetus. He manipulated the baby’s position to expose the neural tube anomaly. Then Dr. Greene’s team stepped in to repair the myelomeningocele.
An obstetrician from the University of North Carolina at Chapel Hill who had experience with in utero repair consulted in the operating room via telemedicine.
Visualizing the defect through a microscope, Dr. Greene separated the nerve tissue from surrounding skin, sewed a patch in to close the dura over it, and closed the skin. The neurosurgical portion of the three-hour surgery took about 40 minutes. For two weeks following surgery, Mrs. Mullen was put on a regimen of strict bed rest while she healed. The doctors wanted her to carry the baby as long as possible but monitored her closely for the risk of uterine rupture.
Emery Greene Mullen was born by Caesarian section on Feb. 26, 2019, at 32 weeks gestation, and weighed 4 pounds 7 ounces. “When I delivered her, she was kicking her feet and flexing and extending her toes,” says Dr. Emery. “She should not have nerve function to her toes. She should not be able to do that based on the level of the lesion. It was like, wow, we made that happen. It’s a win.”
Mrs. Mullen, now 29, recalls: “Dr. Emery told everybody in the operating room that day that they were a part of history. It was pretty cool to know that now there will be other moms that will be helped, too.”
That’s right. Emery Greene is named in honor of the surgeons who made a lasting impact on her life. “They both have changed our lives forever. I hope that Emery will be proud to carry those two names as she gets older,” Mrs. Mullen says.
At 8 months old, Emery has beautiful blue eyes and is able to curl her toes. She has slight weakness in her toes on one side, and a small scar on her back where the repair was made, but no sign of hydrocephalus. “Based on the anatomic level of the defect, she should have had no movement below her knees. That is a big improvement,” says Dr. Greene, who predicts Emery will be able to walk.
“The one thing that I’ve learned in my nursing career is that kids are resilient and they usually overcome more than what is to be expected,” says Mrs. Mullen. “I’ve seen that with Emery. She has definitely exceeded everybody’s expectations.”
Emery will have follow-up visits at the UPMC Children’s Spina Bifida Clinic, Division of Pediatric Rehabilitation Medicine, which offers a comprehensive, coordinated set of services for children up to age 22.
“What a perfect family they were to be our first patients. They show up for every appointment. They take great care of her. They are maximizing her outcome,” says Dr. Greene. “They are making us look good!”
To follow along with Emery’s journey, follow us on social media as we capture her big milestone moments.
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